TWO sisters “robbed of so much” by a rare genetic disorder have described getting their lives back thanks to a treatment which has just been approved by the health watchdog.

Liz Gill and Sue Burrell have debilitating and potentially life-threatening metabolic disorder acute porphyria.

The sisters, from Barnard Castle, were diagnosed in their 20s and spent much of their lives in hospital and even had to use a wheelchair with symptoms such as chronic pain, fatigue, nausea and vomiting.

Both say their lives were changed when they began a trial of the medicine Givosiran, which The National Institute for Care and Excellence is today recommending for use by the NHS in England to treat recurrent attacks of acute porphyria.

Mrs Gill, 44, said: “Most of my twenties disappeared in a blurry haze of hospital admissions and all that comes with them – pain, sickness, paralysis, breathing assistance, humiliation of being unable to care for personal needs or feed self, sickness, pain, pain, pain- and repeat.

“AIP robbed me of so much: to take part in normal life, the chance to work and develop a career, to walk, run and exercise, to travel.

“Finally, in my mid-40s, this treatment has given me the chance to start experiencing life as it should be.”

Mrs Burrell, 41, said: “I suffered a progressive deterioration in health with each attack – increased weakness, more pain, more fatigue, disturbed sleep, more haem, more sickness, more use of the wheelchair, escalating levels of medications, anxiety around earnings, lost independence, lost job and company car, downsized home as couldn’t afford on one wage, complete dependence on partner for physical care, such as bathing, cooking and cleaning, as well as complete financial dependence on my partner and the benefit system.

“One of the hardest things was also having to admit that I couldn’t do things that I was previously able to do.

“This treatment has been completely life-changing.

“I am able to contribute to family life, to my life, to think of the future. I feel able to take on responsibilities as a mother, a wife, and an employee – as everyone should be able to.

“I don’t have to continuously plan. I’m able to live a life that I did before and, for the first time in a long time, I’m excited for what my future could be again.”

Sue and Liz

Sue and Liz

Both women run the British Porphyria Association to support others affected.

Chair of trustees, John Chamberlayne, said: “For decades, people with this life-threatening condition have had limited options to control the relentless and debilitating pain, nausea, and fatigue that dominate virtually all aspects of their lives.

“The decision today from NICE is therefore a very welcome and important one. It will mark real change for patients and families in future, allowing more people to live without the constant fear of when the next agonising attack may strike.”

 

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